What a Day Yesterday was!

 

Let me start off with how much of a "win" it was for Pman yesterday. Tim took Parker and Quinn to the McDonald's playplace by our house with Tim's mom, Mary, for lunch. Parker has never been comfortable in the tubes in the playplace. Kids are screaming, laughing, pounding on the equipment...these things have always been a little bit of an overload for him. He always enjoys himself in there while running around on the ground and spinning the little steering wheel in the entrance and giggling. Well, yesterday Tim brought Parker into the tube equipment to see if he would go on the lower level slide. He was apprehensive and slightly scared but with Tim there coaxing him and telling him its ok in uncharted territory, he followed Tim through the tubes and went down the slide with Tim! Tim jumped around with him once they reached the bottom and Parker busted out in laughter. He couldn't contain his excitement! He did it!!!! Then to make matters even BETTER, as soon as they were done jumping for joy together, Parker tore off climbing back to get to the slide again!! ALL BY HIMSELF!!! Tim said he could hear him laughing within the tubes and giggling the whole way!!! He went down that slide about twenty times!!!  Then after one time going down the slide, Parker went up and he never came down the slide. He was in the tubes for about fifteen minutes and so Tim decided to venture up there worried that Parker got lost and was scared. Tim squeezed through those tubes to find Parker. When he did, he was lost in there up high in the tubes but he was ok. He didn't seem too scared. Tim said that when Parker saw him, he grabbed his hand right away but didn't seem too scared that he was lost in the tubes. They were so close to the top slide that Tim took him down that slide and he loved that too!! Right away Tim texted me at work about it and I started tearing up at my desk. I was so unbelievably proud along with Tim and Grandma Mary. Then when Parker was on the ground running back and forth, an adult was on the bottom equpiment watching their kids next to Parker. Then suddenly a child screamed and it caught Parker off guard so he immediately went to the adult there and sat in her lap. He always seeks adults for stability which is good but also concerns me in regards to him learning about strangers. He's a very trusting boy so will be a learning opportunity in the future. But its ok...because yesterday was a great day for overcoming an obstacle to him....the playplace tubes.

When I got home from work, I rushed up to him and said how proud I was of him for going down the big slides all by himself and how he was such a big man doing it all by himself! To see his face, it was so beautiful. His face lit up with delight and I could just see how he was so proud of himself. It was beaming from him. It was a great moment.

As for the rest of the evening...that's a different story. From about 4:30 until he fell asleep...it was all meltdown mode. That's just it though...you never really know how your days go when it comes to little ones in general but especially ones on the spectrum. Things can be hunky-dorey one moment and then the complete opposite the next. But this isn't necessarily a post about that portion of the day....it's a post about how much Parker challenged himself and how much he blew us away with what he accomplished. He does this practically everyday and that is why I am so proud to call myself his Mama and being a part of every moment. Even when I am at wits end when he screams for hours on end and even throws up from being so worked up....those things honestly leave my mind so quickly. I'm not saying that naively either. When there is a day like yesterday where every emotion comes up...I always hold onto the ones that are the positive ones. Ones that make me beam just as much as he does everyday. Another reason why he is my hero. My Parker.

It's always a new day but...

So I've gotta say...I'm basically running on empty. Both Tim and I are. Right now Parker is averaging about 4 hours tops of sleep on a good night. We have tried everything we can think of to help him get more sleep. His sleep has been erratic for over a year now but in the last few months, it's gotten worse. We have tried melatonin, new bed canopy, memory foam mattress pads, bean bags, deep pressure massage, sleep medication, strict evening and bedtime routines...all with no success. Right now, it's like an alarm clock goes off in him that he is up and ready by 2am. Thing is, he cannot be unsupervised at all for his safety. See, Parker has no real sense of danger so if he is awake, we can't be asleep at all. Plus, my mama-mode engages so when he or my daughter Quinn is awake, mama is awake. Even if I am able to still stay in bed...I'm not asleep. I lay there with my eyes shut but cautiously listening to every little peep and sound. Tim works 2nd shift so when he gets home, I am getting up for work just 2 hrs later. It's hard for any one of us to really get more than about 4 hour of sleep a night. He hasn't napped in over a year either. In a nutshell....it's more than just a challenge. We are on a list to see a sleep specialist but it's over a 9 month waiting period. For something as important as sleep...a 9 month waiting period is just insane. Almost as insane as our nights here at the Brom household. I am doing my best to just keep my head above water but it's not easy. I am a very determined person and when it comes to my kids, everything about myself comes last. I try to make time for myself but right now, it's not an option. I wake up by 2am or so when Parker wakes up, my alarm goes off at 4:30am, start work downtown minneapolis at 6am, off work at 2pm, get home just to kiss Tim goodbye and I begin my second full time mama job. Im not off the clock really at any time. Whenever I get both kiddos to sleep, I pass out just to wake up a few hours later and my next day begins. Honestly, I don't know how I am doing it right now. I think it's just because I am on auto-pilot mama mode. I just do what I need to do and anything else, I don't really have energy for. Needless to say, reality is going to hit me one of these days that I wont be able to keep going like this. But until that day hits me, I'm keepin on keepin on. I never really acknowledged how much sleep effects everything before this last year has happened. Some nights can be challenging to start with because of meltdowns and trying to control and help Pman as much as I can...but when you're doing all of this on no sleep and caring for my 8 month daughter during it all...I dont really disengage from auto-pilot mode. I think it's just the way I need to be right now to make it through. 

With all this being said, I have to literally tell myself on my commute to work at 5am that today is a new day and I cannot let the day and night before effect my attitude or outlook towards Pman. After an evening alone with 3 hour scream-fests and meltdowns...it is so difficult not to still feel upset at Parker or the situation the next day or even at the time. Most reasons why Pman has hours of meltdowns is about 80-90% due to him not being able to communicate to me what is upsetting him. It breaks my heart not being able to help him or understand what he wants or needs. But what gets me though is literally talking myself up every day on my commute, auto-pilot engaged, telling myself how today is a new day and it may be different today. Right now, I think that's all I have. I can't get in the mindset of how nothing is ever going to change with his sleep. Yes, I know that just might be the reality but that is not going to help me today...in the here and now. Every evening can be a complete 180 from the previous so I try to stay as positive as I can. I have to.

Auto-pilot mode engaged.

Different But Not Less

After we learned of Parker's autism, there was a period of time where Tim and I pondered different things. We pondered thoughts of what our future held. The largest one was the realization that our lives would be different than what we had originally thought it would be. We thought about how things would be different but we didn't even know what those things would even be necessarily. It began a total thought transformation about raising our little man. I'm not going to lie and say that we only had positive lines of thinking. Saying that would be lying. We thought about kids bullying him more than other kids, we thought about how others would see his differences as a bad thing, we thought about if he would ever be able to verbally communicate, we thought about getting ugly stares from people in public, etc. Things that probably every parent who has a child with autism has thought of. One thought we never had was about "cures." To us, there is no such thing. Why? Because there's nothing "wrong" that would require a "cure." He's different...but not any less. I have a hard time with the concept of "cures." Yes, I want to help Pman in every way, shape and form to process and adapt better to the crazy world around him but not battle something that no matter how much you can fight is still going to be a part of who he is. I believe it has to do with the thought of a label. With all of us, we are all different from one another but why is it when there is a label to that difference, it becomes a bad thing? Or a scary thing? Something to feel devastated about? You can't get away from TV anchors, articles, and radio discussions about the "epidemic of autism" and "the devestating condition effecting millions of children" blah blah blah. With all of that around you, how can you not think about how this difference should a thing to be afraid of and something to be concerned with as a parent? Truthfully, we had to disconnect from it. We had to just look at our son and only focus on him.

Yes, Parker will always do things differently, process his world differently, react to the world differently, communicate differently, interact differently, play differently....but that doesnt mean that any of these things are bad. Different? Yes. Less? No.